Eleanor Longden was a normal college student — until she began hearing voices. Longden recounts her journey with schizophrenia and how she came to listen to and live with her voices.

About Eleanor Longden

Eleanor Longden spent many years in the psychiatric system before earning a BSc and an MSc in psychology at the University of Leeds. She argues that schizophrenia is a "creative and ingenious survival strategy" that should be seen "as [a] complex, significant, and meaningful experience to be explored." Longden is studying for her PhD and lectures and writes about recovery-oriented approaches to psychosis, dissociation and complex trauma.

Copyright 2015 NPR. To see more, visit http://www.npr.org/.

Transcript

GUY RAZ, HOST:

When was the last time that you heard them?

ELEANOR LONGDEN: I still hear them very, very regularly usually, at least several times a day.

RAZ: This is Eleanor Longdon and ever since she was in college, she's heard voices. Do they sound as real as my voice sounds, you know, like in your headphones right now?

LONGDEN: Not always. It's very, very changeable actually. Sometimes, yes, it can feel an external so literally heard through the ears. Whereas at other times, I can hear them from within my head. Some of them are male. Some of them sound quite young. Some of them have different accents so they don't actually sound like my voice.

RAZ: What do they say?

LONGDEN: Anything and everything really.

RAZ: If Eleanor sounds remarkably calm about all this, it's because to get there to get that to that calm place, she had to go through a kind of hell about 15 years ago. Eleanor picks up the story from the TED stage.

(SOUNDBITE OF TED TALK)

LONGDEN: The day I left home for the first time to go to university was a bright day brimming with hope and optimism. I'd done well at school. Expectations for me were high, and I gleefully entered the student life of lectures, parties. Now appearances, of course, can be deceptive. And to an extent, this feisty, energetic persona was a veneer. Underneath, I was actually deeply unhappy, insecure and fundamentally frightened. But I was skilled at hiding it. And as the first semester ended and the second begun, there was no way that anyone could have predicted what was just about to happen. I was leaving a seminar when it started, humming to myself, fumbling with my bag just as I did a hundred times before.

When suddenly, I heard a voice calmly observe - she is leaving the room. I looked around and there was no one there. But the clarity and decisiveness of the comment was unmistakable. Shaken, I left my books on the stairs and hurried home and there it was again - she is opening the door. This was the beginning. The voice had arrived - she is going to the library. And the voice persisted - she is going to a lecture. On and on, narrating everything I did in the third person - she is leaving the room. It was neutral, impassive and even after a while, strangely companionate and reassuring. Although, I did notice that its calm exterior sometimes slipped and that it occasionally mirrored my own unexpressed emotion.

So, for example, if I was angry and had to hide it, which I often did, being a very adept at concealing how I really felt, than the voice would sound frustrated. Otherwise, it was neither sinister nor disturbing, although even at that point, it was clear that it had something to communicate to me about my emotions, particularly emotions which were remote and inaccessible.

LONGDEN: You know, I'd initially started off as certainly somebody who had a lot of things that I needed to deal with in my life. As a child, I'd experienced some very traumatic events, particularly sexual abuse. And that was something that, like many survivors of these kind of adversities, I'd worked very, very hard to try and bury the past, but to an extent, had virtually buried it alive. And what basically happened was what had initially started off as an experience - you know, this commentating voice had suddenly been turned into a symptom.

RAZ: And a few months after she first started hearing them, Eleanor decided to tell a friend about the voices, and her friend panicked. She insisted she go see a doctor, which led to referrals to see more doctors, which led to a diagnosis of schizophrenia.

LONGDEN: Because by this point, the voices had - what would have started off as one voice was now many. One of the voices actually saying, you know, in this very mocking way - you can't even spell schizophrenia so what are you going to do about having it? And I think that sort of really summarized it in a way, just a sense of complete disbelief, incomprehension, terror and helplessness.

(SOUNDBITE OF TED TALK)

LONGDEN: Helplessly and hopelessly I began to retreat into this nightmarish inner world in which the voices were destined to become both my persecutors and my only perceived companions. Two years later, and the deterioration was traumatic. By now I had the whole frenzied repertoire - terrifying voices, grotesque visions, bizarre intractable delusions. And I'd been told by my psychiatrist - Eleanor, you'd be better off with cancer because cancer is easier to cure than schizophrenia. I'd been diagnosed, drugged and discarded. And was by now, so tormented by the voices that I attempted to drill a hole in my head in order to get them out.

Now looking back on the wreckage and despair of those years, it seems to me now as if someone died in that place. And yet, someone else was saved. A broken and haunted person began that journey, but the person who emerged was a survivor, and would ultimately grow into the person I was destined to be.

RAZ: In a moment, we'll find out how Eleanor Longden essentially overcame her diagnosis of schizophrenia and moved on. I'm Guy Raz and you're listening to the TED Radio Hour from NPR.

It's the TED Radio Hour from NPR, I'm Guy Raz. And on the show today, stories about people who overcame huge obstacles in their lives. And we're picking up the story of Eleanor Longden, who basically started to go crazy when she was a student at the University of Leeds in Britain. She was hearing these terrifying voices in her head and she was eventually diagnosed with schizophrenia. Now, she could've spent the rest of her life in institutions, but slowly, very slowly she started to get help.

LONGDEN: My psychiatrist at that time gave me a leaflet for an organization in the UK called the Hearing Voices Network. And it was electrifying because what this leaflet was saying, firstly, was that many people hear voices as a response to stress or trauma and that voices can be seen as messages and metaphors for underlying difficulties in people's lives.

RAZ: Wow. And that process just began, that idea that maybe I just need to embrace those voices and work with them.

LONGDEN: Yeah. And what I began to realize is that I hadn't gone mad. I'd been driven mad by trauma, and rather than seeing the things like voices as symptoms, I began to try and see them in more, sort of, compassionate ways. So as survival strategies, as adaptations, as sane reactions to insane circumstances.

RAZ: But what do you think it was that enabled you to overcome that? I mean, to sort of say, you know, I'm a survivor. I'm going to make this work. I'm going to live with this. I mean, for a lot of people that would be impossible.

LONGDEN: The way I think at the beginning, that I negotiated that, was I'd read "Touching the Void," by Joe Simpson, who's a mountaineer, who basically was involved in a very bad accident and ended up at the bottom of a crevice with a broken knee. And he had to make his way back to base camp. And he describes this process of breaking that journey down into tiny stages because he felt that if he really acknowledged the enormity of the task ahead that he would simply sink to his knees in the snow and give up.

So he thought, in the next half-hour I'm going to get to the end of the crevice. And then when I get to the end of this crevice, then I'm going to get that rock. And really, that's what I had to do. So it might be simply, rather than lying in bed all day listening to the voices, I'm going to get up for 10 minutes and go and talk to my mom in the kitchen. And that might be the day's task.

(SOUNDBITE OF TED TALK)

LONGDEN: Ultimately, I was gathered together in my shattered itself, Each fragment represented by different voice. Gradually, withdrew from all of my medication and return to psychiatry only this time, from the other side. Ten years after the voice first came, I finally graduated. This time with the highest degree in psychology the university had ever given and one year later, the highest masters, which shall we say isn't bad for a mad woman. In fact, one of the voices actually dictated the answers during an exam, which technically possibly counts as cheating.

And I worked in mental health services. I spoke at conferences. I published book chapters and academic articles. And I argued, and continue to do so, the relevance of the following concept - that an important question in psychiatry, shouldn't be what's wrong with you, but rather what's happened to you? And all the while, I listened to my voices, with whom I'd finally learned to live with peace and respect, and which in turn reflected a growing sense of compassion, acceptance and respect towards myself.

RAZ: So how do you do that? How do you make space for them in your life?

LONGDEN: I mean, the way I understand my voices now is very much as parts of me, essentially. So say recently I had to submit a journal article to, sort of this quite prestigious journal and feeling very, very anxious about that. And was at that point, you know, where your finger's hovering over the button you're about to press submit. And one of the voices said, don't. And a few years ago, my reaction to that would probably have, either to become very angry with the voice or to become very fearful and take it, that word don't, completely at face value. Whereas now, what I would say to it first, was maybe something like, why?

And then the voice said, you know, something along the lines of, oh, you know, it won't be good enough and people might be critical of it. So how I would deal with that now is simply, you know, say, respond to the voice something like, you sound really anxious and fearful. You know, I'm sorry you feel like that. But don't worry because nobody's perfect, and if there are mistakes in it, it's fine. So do you see what I mean? It's sort of like using the content of the voices in quite a healing and restorative way.

RAZ: But, I mean, if someone were to say, OK, you're going to wake up tomorrow and you are never going to hear those voices again, what would you think?

LONGDEN: I sometimes feel I should insure my voices 'cause if they ever, do ever go, I'd be out of a job. So my professional livelihood depends on them. I would miss them if they went, which is an extraordinary admission in some ways because I am somebody, who at one point, would literally rather have died than live with my voices.

(SOUNDBITE OF TED TALK)

LONGDEN: The human animal is a unique being, endowed with an instinctual capacity to heal and the intellectual spirit to harness this innate capacity. We don't have to live our lives forever defined by the damaging things that have happened to us. We are unique. We are irreplaceable. What lies within us can never be truly colonized, contorted or taken away. The light never goes out. As a very wonderful doctor once said to me, don't tell me what other people have told you about yourself, tell me about you. Thank you.

(APPLAUSE)

RAZ: Eleanor Longden. She's planning to get her PhD in psychology from the University of Leeds next summer. Her talk's called, "The Voices in My Head." And you can hear the whole thing at TED.com. Transcript provided by NPR, Copyright NPR.